What I Wish I Knew About Macular Degeneration

Recently a friend told me she wished she had known she was going to live this long. She added, “If I had known that when I was young, I would have taken better care of myself.” Now in her 60’s and living with multiple chronic conditions, she finds it very difficult to take the steps needed to improve her health.

Taking inventory

That conversation began a look back as I took inventory of my own life. I thought of many things I would do differently had I known I would have age-related macular degeneration (AMD). And yes, I would definitely have taken better care of myself.

Diet

My parents were owners of a small general store when I was growing up. We literally lived upstairs above the store. As a young child I was slim but after moving above our store I began gaining weight. With unlimited access to junk food, the relatively healthy diet I ate previously went out the window.

By the time I was in my 40’s, I was 100 pounds overweight. I began my weight loss journey and achieved my weight loss goals but I still wasn’t eating a healthy diet.

After my diagnosis with macular degeneration, I started eating more leafy green vegetables and healthy oils. The Mediterranean diet is recommended for those of us with macular degeneration. Today I continue trying to follow that diet within the limitations I have living in a food desert.

Smoking

In my 20’s I started smoking; not too surprising since both my parents smoked. Soon I was up to two packs a day. After 14 years and three attempts, I stopped smoking.

I was no longer smoking by the time I was diagnosed with AMD but the damage was done. Smoking is the leading preventable risk factor for AMD.

Exercise

During all those years I was overweight, I was also sedentary. It was only after I turned 50 that I began getting regular exercise.

It was hit and miss until my diagnosis with AMD. I learned that people who walked three or more times each week were 70% less likely to develop macular degeneration than those who did little exercise. Today I aim for 30 minutes of moderate activity 5 times weekly.

Sun exposure

Like most teenage girls growing up in the 60’s, I worked on my tan with no thought to sun damage to my skin or my eyes. Later as I began working, often with a long commute facing the sun, I neglected to wear sunglasses.

Although not conclusive, some research connects unprotected exposure to sunlight with the development of AMD. It’s just one more thing I wish I had known about AMD growing up.

Today I keep a pair in the car and another pair by my purse. After reading an article written by Richard, a fellow advocate, I invested in a pair of Cocoon sunglasses that protect with a wraparound design.

Hope

The greatest fear most of us with AMD have is the fear of being blind. I wish that early in my diagnosis I had known I had reason to be hopeful. Only about 10% of those with dry AMD ever progress to wet. Just knowing I will retain my peripheral vision in the worst-case scenario gives me hope. Finally, I am hopeful that one of the clinical trials will result in a treatment for dry AMD.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).